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Tag Archives: ME/CFS
Email to Dr. Lee: Request to Cancel Today’s CFSAC Meeting
Dear Dr. Lee, Thank you for sending the updated agenda for today’s CFSAC meeting 1.5 hours before the start of the meeting. I take that to mean that the meeting will take place although the email did not expressly say … Continue reading
Posted in Uncategorized
Tagged CFS, CFSAC, Chronic Fatigue Syndrome, Dr. Lee, ME, ME/CFS, Myalgic Encephalomyelitis
3 Comments
Twilight Zone: IOM Committee Nominations Not Even in the Realm of Reasonableness
Today, the IOM published the provisional IOM committee appointments for the institution’s ME/CFS “study.” I have only taken a brief look at the list of nominees. Others are in the process of “vetting” the nominees and researching their background. I … Continue reading
Sebelius “Responds” to the Experts: “You Mean This Is Not What You Wanted?”
On November 12, 2013—as I found out just yesterday—more than seven weeks after the original open expert letter was sent to her, Secretary Sebelius finally provided a brief “response” mirroring the talking point provided in the FAQs of November 15, … Continue reading
Call for the HHS Competition Advocate to Investigate the IOM Contract
I have sent today to the so-called “Competition Advocate” for HHS a request to investigate what appears to be a dramatic failure of HHS to follow applicable federal law and regulations regarding full and open competition in its award of … Continue reading
Posted in Uncategorized
Tagged Approval by Competition Advocate, CFS, CFSAC, Chronic Fatigue Syndrome, Chronic Multisymptom Illness, CICA, CMI, Competition in Contracting Act, Daniel Le, Deborah Griffn, DHHS, Dr. Kenneth Shine, FedBizOpps.gov, Federal acquisitions, Forbes, Full and open competition, Gulf War Illness, GWI, HHS Competition Advocate, Inspector General, Institute of Medicine, IOM, IOM Contract, Justification, ME, ME/CFS, ME/CFS Case Definition, ME/CFS Diagnostic Criteria, Myalgic Encephalomyelitis, Open-Competition Requirements, Procurement Notice, Responsible Source, Sole-Source Solicitation
10 Comments
The CFSAC Plot Thickens: A Tone-Deaf, Disrespectful State of Affairs
The next CFSAC meeting, which was supposed to be held earlier this month, but got postponed to December, brings with it so many changes that one has to wonder: Is this the beginning of the end for CFSAC, maybe not … Continue reading
Supplemental Request for Investigation by OIG: Did DHHS Violate its No-Bid-Contract Requirements for IOM Contract?
[Updates: 2014/01/08: After OIG Dodges Charge of IOM’s Conflict of Interest, Meaningful Reply Demanded 2014/04/04: IOM-OCI-OIG … OMG! 2014/05/28: OIG Fails to Investigate IOM Conflict of Interest & Tells ME/CFS Patients to Buzz Off] Today, I supplemented my request for investigation by the … Continue reading
Posted in Uncategorized
Tagged CFS, CFSAC, Chronic Fatigue Syndrome, DHHS, DHHS Handbook, Dr. Kenneth Shine, FAR, Inspector General, Investigation, IOM Contract, JOFOC, ME, ME/CFS, Mr. Daniel Levinson, Myalgic Encephalomyelitis, No-Bid Contract, Secretary Sebelius, Violation of open-competition requirements
26 Comments
Inquiring Minds Want to Know: Who is Behind the IOM FAQs?
Today, somewhat mysterious—and maybe (based on the quality and the formatting) hastily drafted—FAQs regarding the IOM contract (“FAQs”) appeared on the Internet. I say mysterious because the authorship of these FAQs is unclear. Is this statement an official pronouncement of … Continue reading
Posted in Uncategorized
Tagged CAA, CFIDS, CFS, CFSAC, CFSAC Charter, CFSAC listserv, Chronic Fatigue Syndrome, Conflict of Interest, Daniel Levinson, Dr. Kenneth Shine, FAQs, HHS, Inspector General, IOM Contract, Kate Meck, ME, ME/CFS, ME/CFS Diagnostic Criteria, Myalgic Encephalomyelitis, PANDORA, Request to Investigate Conflict of Interest, Sebelius, Termination for Convenience
6 Comments
Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME/CFS
[Updates: 2013/11/17: Supplemental Request for Investigation by OIG: Did DHHS Violate its No-Bid-Contract Requirements for IOM Contract? 2014/01/08: After OIG Dodges Charge of IOM’s Conflict of Interest, Meaningful Reply Demanded 2014/04/04: IOM-OCI-OIG … OMG! 2014/05/28: OIG Fails to Investigate IOM Conflict of Interest & … Continue reading
Posted in Uncategorized
Tagged 2013, 48 C.F.R. section 9.504, 48 C.F.R. section 9.505, Bias, Case Definition, CFS, Chronic Fatigue Syndrome, Chronic Multisymptom Illness, CMI, Conflict of Interest, DHHS, Diagnostic Criteria ME/CFS, Gulf War Illness, GWI, Inspector General, Investigation, IOM, IOM CMI Report, IOM Contract, ME, ME/CFS, Mr. Daniel Levinson, Myalgic Encephalomyelitis, Open Advocates' Letter November 9, Open Experts' Letter October 25, organizational conflict of interest, Secretary Sebelius, \
47 Comments
Overwhelming, Growing Support of ME Experts by Advocates in Opposition to IOM Contract: Advocates’ Open Letter Re-Sent With Additional Signatures
As was the case with the experts’ open letter to Secretary Sebelius—which was first published on September 23, 2013 and then updated on October 25, 2013—the October 28, 2013 advocates’ letter now has been updated with additional signatures and re-sent … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, DHHS, HHS IOM Contract, IOM Contract, IOM Controversy, ME, ME/CFS, ME/CFS Advocates, ME/CFS Experts, ME/CFS Open Letter to Secretary Sebelius, Myalgic Encephalomyelitis, Open Advocates' Letter, Secretary Sebelius, Tweets, Twitter Campaign
19 Comments
66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of their Experts
Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, Dr. Anthony Fauci, Dr. Francis Collins, Dr. Harold Varmus, Dr. Harvey Fineberg, Dr. Howard Koh, Dr. Margaret Hamburg, Dr. Richard Kronick, Dr. Thomas Frieden, Dr. Wanda Jones, HHS IOM Contract, IOM, ME, ME/CFS, ME/CFS Advocates, ME/CFS Experts, Ms. Carolyn W. Colvin, Ms. Marilyn Tavenner, Myalgic Encephalomyelitis, Secretary Sebelius, Senator Jerry Moran, Senator Tom Harkin
12 Comments
16 Additional ME/CFS Experts Added Signatures to Open CCC/IOM Letter to Sebelius
On September 23, 2013, thirty five ME/CFS experts sent an open letter to HHS Secretary Sebelius informing her that they have come to a consensus about the use of the Canadian Consensus Criteria (CCC) as the official disease definition and … Continue reading
New M.E. Documentary Needs Funding: “Canary in a Coal Mine”
“A film about life with M.E., the most prevalent and devastating disease your doctor has never heard of.” Please go to the Kickstarter page to donate to this important film project. From the film’s website, which has more information about … Continue reading
November 2013 CFSAC Meeting: 3 Weeks before Meeting, Information for Patients Still Outstanding
I sent the following email inquiring about the November 2013 CFSAC meeting, which is scheduled for November 12th and 13th, 2013, less than 3 weeks from now. I’d encourage other patients who have questions about the upcoming meeting to email … Continue reading
Principled Approach: Fighting the IOM Contract is a Moral Imperative
“If patient advocates sit on the committee, they will be played. The government will then be able to say the patient sector was represented in the committee’s actions and the outcome of the work.”—John Herd, veteran patient advocate, October 10, … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, HHS, IOM Contract, ME, ME/CFS, Myalgic Encephalomyelitis, Secretary Sebelius
31 Comments
More Propaganda: Still no Explanation from CAA for Disagreeing with Experts and Patient Majority
Based on context and substance, we have to assume that the latest blog entry posted on the CFIDS Association of America’s (CAA) website was written by Suzanne Vernon although it was not signed and the author wasn’t identified. Suzanne Vernon … Continue reading
Posted in Uncategorized
Tagged CAA, CCC, CFIDS Association of America, CFS, Chronic Fatigue Syndrome, chronic multi-system illness, CMI, Compensation, Gulf War Illness, GWI, Institue of Medicine, IOM, Kim McCleary, ME, ME/CFS, Myalgic Encephalomyelitis, Salary, Secretary Sebelius, Suzanne Vernon
27 Comments
Please Sign Petition: Thank You to Our ME Experts
Link to Petition: http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/ Our experts have taken a brave and trailblazing stand for ME patients by agreeing, in an open letter to Secretary Sebelius, on an official definition for “ME/CFS,” the Canadian Consensus Criteria (CCC). This is what Secretary Sebelius has … Continue reading
Spinning Around-CAA Putting Political Spin on the IOM
“A “spin room” …. is an area in which reporters can speak with debate participants and/or their representatives after a debate. The name refers to the fact that the participants will attempt to “spin” or influence the perception of the … Continue reading
Posted in Uncategorized
Tagged CAA, CCC, CFIDS Association of America, CFS, Chronic Fatigue Syndrome, chronic multi-system illness, CMI, Dr. Bateman, Fred Friedberg, Gulf War Illness, GWI, HHS, HHS IOM Contract, IACFS/ME, IOM Contract, ME, ME/CFS, Myalgic Encephalomyelitis, Secretary Sebelius, SEP, Special Emphasis Panel, Spin Room, Suzanne Vernon
26 Comments
Perfect is the Enemy of Good
[Disclaimer: I am not in very good shape and I do not, at the moment, have the stamina some other advocates do. But the recent developments are so monumental that I felt I nevertheless should give my impressions as best … Continue reading
CFIDS Association Asking Signatories to Withdraw Endorsement of CCC
I know this for a fact, but can’t disclose my source: The CFIDS Association of America (“CAA”) has contacted at least some, maybe all, of the 35 signatories of the letter addressed to the HHS regarding the adoption of the … Continue reading
Thoughts About M.E. 
CFSAC Meeting Needs to be Rescheduled as a Two Full Day In-Person Meeting
[Update: Please email Dr. Lee with copies to Sebelius, Koh and Jones requesting that the meeting be rescheduled as a two full-day, in-person meeting: Nancy.Lee@hhs.gov Kathleen.Sebelius@hhs.gov howard.koh@hhs.gov Wanda.Jones@hhs.gov] Even the weather gods don’t agree with HHS’s cowardly decision to hold … Continue reading →